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Monday, 1 March 2010

I have, since my diagnosis, believed that I am now officially unshockable. I assumed that hearing the words ‘signs consistent with breast cancer’ – those same words that came so out of the blue that they ought to have been delivered by a Smurf – meant that I had maxed out on my life’s limit of surprise. I thought that, in my repertoire of reactions, astonishment was an emotion I’d never again need to convey. And I figured that I was still so taken aback by that initial shock that I would forevermore be able to anticipate any nasty surprises coming my way, and prep myself for them like a particularly terrifying job interview.

I was wrong.

Because just as I was getting used to the novelty of not thinking about cancer all the damn time; just as I was happily filing my nails while leaning against my goalpost, The Bullshit pulled one back. And as I blithely stared at my cuticles, only casually aware of the game being played before me, The Bullshit produced the goal of the season: a screamer from way back inside its own half that thundered past me like a bullet from a gun before I'd even had a chance to reach out my hand to stop it.

Last Friday afternoon, I left work early to head to a hospital appointment. An appointment so non-event-ish, I assumed, that I even told P not to bother coming with me. It was for one of the many studies and clinical trials I’ve put my name to, this time about genetics in occurrences of breast cancer in younger women. It’s enabled the folk in that department to have access to my medical file, to run tests on my blood samples, and to map out my family tree and ancestral cancer history, minuscule though it is. And it’s been pretty interesting, as these studies often are.

To say I had the Friday Feeling would be playing it down somewhat. Not only was it payday, but payday at the end of my least favourite month of the year, and as I turned the corner to the hospital, I chirpily swung the French Connection bag that housed my lunchime payday-purchase: a cheery floral skirt that marked the official opening of my spring wardrobe.

‘Ooh, have you been shopping? Let’s see,’ said my consultant geneticist (let’s call her the Gene Genie, given that she’ll doubtless be making a more regular appearance on this blog).

‘Yeah, but he’s at work this afternoon,’ I said. ‘He works in sales and it’s the last day of the sales month so it’s important that he’s around in the office to make sure all the targets are getting hit.’ (I always give people way more information than they need to hear.)

‘Oh-kayy,’ she said, ominously. ‘So, has anything changed since the last time I saw you?’

‘It has, actually. My auntie; that one there,’ I replied, pointing to a circle beside the square that represented my Dad on our family tree. ‘She’s been diagnosed with breast cancer. Just a couple of weeks ago. She’s had a mastectomy and she’ll be going back for further histology results next week.’

The Gene Genie coloured in half of my auntie’s circle with her biro. ‘Ahaa. That’s very interesting,’ she said.

‘It is isn’t it?’ I interrupted. ‘And weird, right? No occurrence of breast cancer in this whole family tree until me and now my auntie too? It’s one hell of a coincidence.’ There I went again, talking too much.

‘Well actually,’ she added, producing a piece of paper that looked like a form you’d read your A-level results from. ‘It’s interesting in light of what we’ve discovered from your blood tests.’

‘Oh?’

‘Now this will undoubtedly come as a shock – it certainly did for us – but we’ve discovered that you are, in fact, carrying the breast cancer gene.’

I looked from the results slip to the treatment bed opposite. The head of the bed was at a 45-degree angle. I had an urge to straighten it.

‘But last time we concluded that I definitely wouldn’t have the gene,’ I protested, convinced she’d got it wrong.

‘Well, given the lack of family history, none of us could have expected this. We even tested it three times. And this, I must say, is an incredibly unusual way round for the gene to present itself.’

‘You’re not kidding,’ I huffed.

‘I know it must be a huge shock,’ she said again. ‘And, like most people, I expect your first instinct will be to think about survival.’

I didn’t tell her that my first instinct had been to obsessive-compulsively straighten her treatment bed.

And that’s where the dialogue ends. Because, as one tends to do in these situations, I didn’t take it all in. I know she told me that the gene I have is called BRCA-2, and that it relates to oestrogen-receptive cancers. I know she talked about my greatly increased chance of a breast-cancer recurrence (as much as 80%, according to this website). I know she suggested making swift appointments with the necessary experts to talk about my preventative-surgery options. And I know she talked me through every member of my family, how they could get tested and what it meant for them, given the assumption that the faulty gene has come from Dad’s side. But more than that, I can’t remember exactly what was said in our 90-minute appointment, because all I could think was: ‘So that’s it, then. That’s why I got cancer.’

To shamelessly plagiarise my old man’s analogy, it felt like someone had shoved a firecracker between my ears. All the thoughts about what this meant – for me, for my family, for P, for the narrative of my book, for my remaining natural tit, for my ovaries, for my uterus, for my sex life, for my body image, for my life expectancy – fizzed inside my head in a mess I couldn’t control. I tried to grab each one and pocket it into a corner like a game of Hungry Hippos, but I couldn’t decide which problem to deal with first. Because the one thought that continually ushered them all out of the way was: ‘So that’s why I got cancer.’

You might imagine that there was some relief to be had in hearing that – and for my family, I think, there has been – but I now realise that there was a huge part of me that appreciated the randomness of my diagnosis. There was a weird safety in its freak nature, like being hit by a bus or struck by lightning. Because, really, how often does that happen to a person twice?

But now, there was a reason. And not just a reason, but a large, looming threat to spend the rest of my life living beneath, with the potential to define me in a way that I constantly try so fucking hard to avoid. I don’t want to spend my life battling cancer. I want to be shut of the motherfucker. (Eh up, the fucks are back.) I want it to piss right off and just be a quirky little story I can tell people in the future, the way that Winona Ryder might talk about her shoplifting or Stephen Fry might talk about his prison sentence. I want to be defined as happy Lisa; as lucky Lisa; as Lisa the wife; as Lisa the friend; as Lisa the writer – oh, how I want to be defined as Lisa the writer – and not as Lisa the cancer patient, or Lisa the one who everybody has to worry about. I’ve had my fill of being on the receiving end of people’s worry. And if they really must worry, then let them worry about me eating too many Curly Wurlys or not selling enough books or not knowing when to stop with cava – not about when The Bullshit may strike again.

I know that discovering that you’re carrying the BRCA gene isn’t a cancer diagnosis. (I suppose it’s more like a cancer consultation-period.) And I know that there are good things to come from knowing what I now do, like the favour it’s done my family and the opportunity for me to lower those heightened recurrence chances. But there are undoubtedly similarities between the two, as well. The process of feelings you go through – shock, terror, upset, anger, practicality – remind you of when you were diagnosed. Your family and friends’ reactions remind you of when you were diagnosed. And the seriousness with which people speak to you reminds you of when you were diagnosed.

So there we go. That’s the reason I got breast cancer. And, thanks to that reason, there’s a hell of a lot of information that I’ve got to spend the next few months getting my head around. There are experts to speak to; tests to have; decisions to make. But first, I think, I just need to get over the shock of being shocked. And once that shock has subsided, I’ve got to learn to live with a lot of uncertainties. But there’s one thing I know for sure: The Bullshit ain’t over.

Second of all--bear with me, as this unfortunately involves a bit of backstory. I got eosinophilia myalgia syndrome from contaminated L-tryptophan, which I had been prescribed to counter the effect of antidepressants...which I had been prescribed after I sought counseling to deal with the major depression that runs rampant throughout my family, but for whatever reason had hit me particularly hard.

Though the genetic basis for depression has been definitively established, did I blame my genetics for having gotten EMS? Nope. I blamed myself.

Even these many years later, there's still a part of me that thinks, "If only I hadn't sought help" (y'know, like a halfway pro-active, psychologically-healthy person), "I wouldn't be this scarred, ouchy mess I am today." This, despite knowing full well that if I hadn't gone on meds, I probably wouldn't have made it to age 30 (as the recent rash of celebrity-kid suicides sadly evidences, depression is nuthin to mess with, let alone go untreated).

As a consequence, I believe there's an inherent safety in believing oneself to be the victim of random fate, rather than the smack-dab centre of a genetic bullseye...but you know what? It is what it is.

And one thing you is, most definitely, is a strong, brilliant, resourceful lady who can handle this. You've taken the shit sandwich that cancer & genetics have handed you and made it into a repast fit for a king (alright, yes, I specialise in OTT metaphors that don't hold up under close examination).

Right now I think you just need to stand there on the pitch with your hair blown back by the screamer that just went by you, listening to the crowd roar and taking it all in...because you've got plenty of backup on d, missy, who aren't about to let any more get past you. Dig?

Hi - it's me again. I am sorry to hear your news. Funny enough my sister went to see the BC consultant on Friday - as she had been referred by our GP for genetic counselling. Turns out they think we may have a family history and have suggested she is tested. I know it sounds silly, cos I already have BC, but it made my heart sink. I too thought that I would get rid of this crap and move on - but I may now hear that she is at risk ... and that I am at risk of it coming back.

Am awaiting the book in anticipation of it being a good read as you put it as part of a "backstory" wasn't expecting it to be a first chapter in a potential struggle... Think bringing back the 'fuck' is an appropriate reaction.

Fing is, you ARE 'Lisa the Writer'. You always have been, I met you ten years ago and I've always defined you like that, whether you're blogging your way brilliant through the bullshit, or being particularly acerbic about Robin Williams in 'Bicentinial Man' ("a cringeworthy palaver of forced sentimentality". yer, I looked it up!) . That's just what you do. Cancer or no cancer, you're a writer. With a book and everything. And once that hits the shelves you're 'Lisa the Writer' for ever, unless you get famous for something else, like being the first woman on Mars or getting a special allowance for Polygamy and marrying that Grohl fella.

Wow! That is totally fucked up! I am right in the middle of treatment for the bullshit that I got diagnosed with in June 2009. Finished chemo in December. Finished radiation last week. Herceptin will go on through August. And I have NO idea if I carry the gene, or if I was even tested for it. Guess I'd better find out.

Discovering this blog has really helped me through treatment. And is teaching me a lot & helping me ask the right questions.

Dear Lisa the Writer,I've just had shit news too.. not many options left, but always find that the knock-back brings with it a HUGE amount of confidence & determination to fight this.. *insert lots of swear words* !and I KNOW we will both once and for all get rid of this *insert more* !I'm literally fed up to the max now, but just want to keep confusing the experts, so join me with the blinkers again and let's.. *insert even more* !Loads of love,Carol the Musicianxxx

I have the BRCA 1 gene alteration - and I knew about that before I got BC.

Yes it is a bummer because you know there is a pretty good chance of recurrence - but the good thing about knowing is that it does give you the chance to do something about it. You can reduce the risks to virtually nil, and take charge of the future.

That doesn't make it easy - as you may end up making some drastic choices (I have a 2nd mastectomy plus ovarian and womb removal to look forward to this spring) - but I am going to fight the Darkness in every way possible and as aggressively as possible.

You are a fighter, Lisa... You will come out the other side - bruised, battered - and missing a few bits - but as a survivor.

Lisa (the writer; the fighter), what can I say ... you'll get your head around this and you'll do what needs to be done to battle this bastard, same as last time, same as me. I'm in limbo just now, between new tests at the moment, awaiting results, but if I have to start the fight again , I will, and I know that I'll be helped through whatever might be on the horizon by reading your blog. Sending you all my love and "be strong" vibes, Colin.

I agree with Heather's comment, I think of you as Lisa the Writer, you just happen to have had a whole lot of Bullshit to write.

I'm in shock, so I can't imagine how you must be feeling. I am so sorry that life handed you this one, it's not fare.But, Lisa, you can do this. You are a strong, talented woman with an amazing support network of friends, family and blog fans and I am sure if any one of us could take this battle away for you we would.

Dude. As I read this, I was saying "fuckfuckfuck" to my kitchen and feeling light-headed. Sorry to hear it but, as has been widely discussed, you're a fighter.

I've said this before, but to re-iterate: I only know of you because of this blog. The effect it has had is for me to 100% think of you as "Lisa, The Amazing Writer", if I was pushed hard, I could add, "who happened to have cancer once, but really, that's by the by". I just do not in any way think of it as your defining characteristic. Even though it's the thing that brought you to write the blog that has taught me enough about you to form a very solid opinion of what you're like.

I think you're bloody wonderful, I really do. But not for the way you "face" anything, just because you're such a good writer and so funny and have such brilliant spirit.

Dude. As I read this, I was saying "fuckfuckfuck" to my kitchen and feeling light-headed. Sorry to hear it but, as has been widely discussed, you're a fighter.

I've said this before, but to re-iterate: I only know of you because of this blog. The effect it has had is for me to 100% think of you as "Lisa, The Amazing Writer", if I was pushed hard, I could add, "who happened to have cancer once, but really, that's by the by". I just do not in any way think of it as your defining characteristic. Even though it's the thing that brought you to write the blog that has taught me enough about you to form a very solid opinion of what you're like.

I think you're bloody wonderful, I really do. But not for the way you "face" anything, just because you're such a good writer and so funny and have such brilliant spirit.

You are definitely Lisa the writer! And a fucking great 1 at that. I'm 2/3 through rads. and am young too, and you ROCK! It's bullshit -- yup it is -- but I have a dear friend who died some years ago and I think about how even on my worst day, it sure beats the alternative and how she'd rather be here than not. Hate when people feel sorry for us BC people -- you know they're also feeling so glad to not have BC, I know, it's human nature.

Eh up

Welcome to the website of me, Lisa Lynch: author, editor, blogger, wife, Ram, telly-addict, doofus, cancer bitch (but not, I hasten to add, cancer's bitch). The latter of those things is what initially got me blogging, swearing my way through The Bullshit following a pesky breast-cancer diagnosis at 28. Some three years down the line – with newly grown hair, a newly published book and a newly perky rack – I dared to assume that I'd seen the worst… only for the c-word to crop up once more: this time in my bones and brain, and this time incurable.

And so, from being a blog intended to chart my evolution from 'the girl who has cancer' to merely 'the girl', it seems we're back to the former. (If, indeed, it's still acceptable to even call yourself a girl in your thirties. Which, let's be honest, it probably isn't.) But before you write this off as Just Another Moany Health Blog, stick with me. Because cancer or no cancer, curable or incurable… I'll still tell it the way I see it. The universe might be in control of what’s going on in my body, but I'm in control of what’s going on in my blog. Which is why I hope you'll continue to join me as I write my way through my experiences. You see, this isn't a story about some poor, unlucky lass being taken down by cancer; it's simply a story about the extraordinary life of an ordinary girl woman.

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